Our son Theo was born far too early at just 25 weeks and four days into my pregnancy. He was very poorly from the start, and despite the fabulous care he received, he died when he was just 17 and a half hours old on 20th March 1996.
We later found out that Theo had been infected with group B Strep (GBS). I’d never heard of it before this point. Although Theo didn’t have meningitis, his GBS infection was overwhelming. It was a complete shock – one moment we were new parents, the next we were grieving the loss of our baby.
In the weeks and months that followed, my husband Robert and I tried to make sense of what had happened. We were devastated, of course, but also frustrated. Why hadn’t we known about group B strep? Why wasn’t it talked about more? And why wasn’t more being done to prevent it?
We began researching, determined to get answers. We discovered that group B Strep (GBS) is a type of bacteria that many people carry without knowing it, usually with no symptoms and without it causing any harm. However, if a newborn baby picks up group B Strep around or shortly after birth, it can sometimes lead to serious infections, typically sepsis, meningitis or pneumonia and sometimes all three.
We also learned just how serious it can be. Group B Strep is the leading cause of severe infection in newborn babies and of meningitis in babies under three months of age. While GBS infections in young babies are not common, they can be life-threatening and can cause long-term health problems in babies who recover from the infection. Most of these infections in newborns can be prevented. That’s why it’s so important that new and expectant parents are given information about group B Strep and what prevention is available, so they can make informed decisions about what’s right for them and their baby.
That’s why we set up the charity Group B Strep Support. We wanted to raise awareness, provide clear and accessible information and push for better prevention so that other families wouldn’t have to go through what we did. Over the years, we’ve spoken with thousands of families: some whose babies have sadly died because of their group B Strep infection, others whose children survived with lasting effects and many who simply wanted to understand the risks and how to reduce them.
We’ve also been proud members of the Confederation of Meningitis Organisations (CoMO) for many years, working alongside others around the world to reduce the impact of meningitis and related infections. It’s been a privilege to be part of that community.
We joined CoMO to join with others in the global fight against meningitis. Being part of this wider community means working alongside others who share the same passion for saving lives and preventing long-term harm. We can learn from each other by sharing experiences. It’s also an opportunity to make sure that group B Strep is recognised as a key cause of meningitis in young babies – defeating meningitis is a fabulous goal to have, but to do that, we also need to defeat group B Strep.